Living Life with Passion

Monthly Archives: October 2014

These are some websites that I have found helpful while suffering from Cushing’s. We all know it is a daily struggle to make it through the day, as well as stay positive. Here are some of my outlets. I hope they can help you too!!

Operation Beautiful

Just to know you ARE beautiful!! Great concept!! You can spread the joy yourself! Join the movement!

Transforming the way society thinks about being healthy versus being skinny. Something WE can definitely try to focus on. Focus on what we can control at least. No one understands more than us the importance of health over being “skinny”.

If you haven’t heard of the “spoon theory”, you have to check this out! For people suffering from chronic illness, this is a great blog, and she has great graphic postings everyday on her Facebook page. I guarantee all of you Cushie’s will relate!! Spoons will have a whole new meaning!!

Since being diagnosed with Cushing’s, I have the privilege of meeting some pretty amazing and courageous people through a few online support groups on Facebook. Let me tell you these people are truly extraordinary and so strong. They give me hope that I can beat this and get back to living a healthy life again.

One of those people is Dr. Karen Thames. She reached out to me and introduced me to a few of the Facebook groups. Karen herself was diagnosed with Cushing’s. In the Cushing’s community she is God sent. Not only has she fought herself. She is an advocate for other’s and is raising awareness of this rare disease. Through Karen, I learned of an interesting fact as to why the “Zebra” is a symbol in the Cushing’s world. Let me share the metaphor with you. I found it quite fascinating myself.

“Zebra” is a term that is used to describe a surprising diagnosis. It derives from the saying “When you hear hoof beats behind you, don’t expect to see a Zebra”. Dr. Theodore Woodward, a former professor at the University of Maryland School of Medicine in Baltimore, coined this term in the late 1940s. He explained that since horses are the most commonly encountered hoofed animal for most people and zebras are hoofed animals that are less likely encountered; one would naturally guess that the hoof beats belong to a horse and not a Zebra. By 1960, this metaphor was widely known amongst medical circles. (From Wikipedia, the free encyclopedia, 2013)

This phrase continues to be drilled into the minds of Physicians in training:

“When you hear hoof beats, think horses, not zebras.”

So, in the medical community the term “Zebra” is universally understood as a reference to a rare condition/disease. Physicians are taught to assume the most likely explanation of the condition and therefore miss more unlikely explanations of the disease. In addition, Physicians are known to be uncomfortable with diagnosing patients with “exotic” diseases that are unlikely.

Ironically, this term ZEBRA has been adopted by communities of patients with rare disorders such as Cushing’s Syndrome, Adult Human Growth Hormone Deficiency, Panhypopit, and other rare diseases. Why? Because those of us who DO have a rare disorder know from personal experience what it feels like to be dismissed by a physician or in many cases, multiple physicians. Metaphorically, many physicians have completely lost the ability to even imagine that zebras may exist!

“It is frustrating indeed, to spend years being shuffled from specialist to specialist, seeking diagnosis and treatment for a condition that no one can seem to identify.” (www.medicalzebras.org, 2013)

We have started a Zebra movement. We call ourselves the “Zebra Crew”! We recognize that this is a term that represents those of us who have these RARE disorders that can go undiagnosed for many years, on average between 3-7 years! However, Zebra is not a weak term! It is a term that acknowledges how strong we are, brave, courageous, beautiful. We bond through the recognition that we have all endured being misidentified as horses!

Now for a little humor to add to my situation… For the past few years, I have been “eyeing” a pair of Zebra pajamas at Target every year, at this time of the year. They are not your normal adult pajamas. They are full body, footie Zebra pajamas. Every year, I just kept telling myself, “those are not a necessity, you don’t need them”. This year, with this new revelation of the Zebra significance to the Cushing’s community, I am breaking down and buying them.

I guess after all, I was destined to be a Zebra.

I hope these pictures make you laugh. They sure made me laugh at myself!!

I have found that laughing is great therapy! So feel free to laugh away!!

Thank you for sharing the story of the Zebra and how it relates to the Cushing’s world, Karen!!

To all of you reading this, Karen has been such an inspiration to me. When I am back to feeling healthy again and have more energy, I fully intend on advocating and raising awareness like Karen does. Karen is the type of advocate I aspire to be for the Cushing’s community. I CAN. I WILL.

Suffering through this horrible disease is not easy; however, I believe God is putting me through this for a reason. I may not fully understand it yet, but I truly believe God has a purpose. God is working through me.

“Trust in the Lord with all your heart
and lean not on your own understanding
in all your ways submit to him,
and he will make your paths straight”

-Proverbs 3:5-6

Like I mentioned above, Karen is an advocate and is raising awareness of Cushing’s. She is currently in the process of creating a documentary to educate others on the disease and what people go through battling the illness. Here is a link to the Facebook page, where Karen will be keeping people updated on the progress of the documentary:

Agape Love aka unconditional love. From the first day Sean and I told each other we loved each other, I have never doubted that…not one bit. As we learn and live life experiences together, that love continues to grow, but one thing is for sure, it is unconditional. I can honestly say Sean has proven that more recently than ever.

We have a family mission statement… it goes like this:

Be Selfless

Be Patient, Kind, Loving, Understanding, & Giving

Put Each Other #1

Never Give Up

Are we perfect? By no means; however, we will always resort back to this.

When I say Sean is the best husband ever. I truly mean it. Through my eyes he is. He has put everything on hold to make sure I am #1. He has reassured me over and over again that while we are in this difficult time of our lives, that we are in it together, and he will NEVER give up. He has been MORE than patient, kind, love, understanding, and giving. He has been more attentive and aware of things about me than I have been myself. Without him, I may be lost right now. God truly made him for me and placed him in my life for a reason. I believe that 100%.

Sadly, I think a lot of people take reciting their wedding vows for granted. Looking back, I didn’t realize how absolutely devoted Sean was to those vows, and he is proving it now.

“For my lawful wife, to have and to hold from this day forward, I promise to be true to you in good times and in bad, for better, for worse, for richer, for poorer, in sickness and health, until death do us part. I will love and honor you all the days of my life”.

Sean is proving these vows day in and day out. I will never be able to repay him or thank him enough. I just have to accept that he is one my most valuable blessings sent from God. I will be forever grateful for that.

I love you more than you’ll ever know, Sean David ❤

You are my Agape Love…unconditionally, forever & always, I will love you!!

Most of you know that October is Breast Cancer Awareness. People from all walks of life rally around. They wear their pink to support, join in events, and some go above and beyond, which is a great way to support their passion. I support any kind of healthy awareness! While Breast Cancer and awareness of breast cancer hits me personally due to loved ones having had to endure the pain and suffering that comes from battling such a horrible illness…some won the fight, some are still battling, and some lost. However, I am going to admit that I am NOT the best when it comes to awareness. I don’t know all of the facts, which brings me to my post and October challenge.

In honor of Breast Cancer survivors everywhere and those at risk, I am challenging myself to make a post on Facebook each day from here on out in the month of October that lists a fact about Breast Cancer. I am hoping this is my way to contribute to awareness!!

Other ways you can expand your own knowledge and spread awareness is by joining in the challenge yourself or taking the time to talk to someone that has battled with breast cancer. Any other good ideas??? Feel free to share below!!

Another way you all can help is by considering a donation to my best friend’s fundraiser for the Avon Walk For Breast Cancer in Charlotte, NC. She is so close to her goal and any amount helps!!

Also, make sure to check out recent articles in the DeWitt Observer to see the happenings during the month of October to raise awareness in DeWitt.

Let’s paint the town pink, and take this great opportunity to educate, prevent, detect, and share the stories. Hopefully with awareness we can save lives!! ❤ ❤ ❤

I would like to dedicate this post two dear survivors that are inspiration to me daily: Sherry Kittoe Stauffer aka “Mama Sherry” and Lori Jess (although I have not known her long, I strongly admire her ability to fight and continue to share her story…that is some of the best awareness of ALL!!)

THANK YOU, LADIES!! Thank you for being strong. Thank you for being an inspiration. Thank you for giving hope.